...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS/SEID Emotional Baggage – Dump It

9/27/2016

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I’ve been helping someone clear out a family home which is full of memories – a mixture of good and bad.  But mostly the house is weighed down with so much emotion that it feels like the structure itself sags under the burden.  Of course I started to think about my struggle with ME/CFS/SEID and the crushing assortment of emotions that I wrestled with.

In the beginning, I was consumed with frustration that I had no answers and anger that I was so quickly dismissed as ‘just depressed’.  Then as I fell into the ME/CFS/SEID trap of push/crash cycles I developed self-blame.   And as the months then years dragged on with no improvement, I felt guilty about the drain I had become on my family and the lost time that I had stolen from them and from me.  Then I added in a good dose of shame.  Eventually I had created a toxic soup of emotions which I was drowning in.

Pile all the worry on top of that and I was definitely going under.  Talk about emotional baggage!  Could I have been any better at bringing myself down?  A surgeon couldn’t have succeeded in removing my self-esteem and self-image more precisely.  And what about all the energy I drained from my limited reserves just festering over this mountain of emotional baggage?


After I spent a couple of years letting these emotions keep me under, I finally came to the understanding that I was only making my struggle with ME/CFS even harder.  It took a great deal of determination to dump the emotional baggage.  But once I started to off load, it felt great.  I became intentional about my emotions and I packed lightly.  How are you dealing with your emotional baggage?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS/SEID Reality – Commit to Being A Patient

9/20/2016

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I recently received an e-mail from a physician who has been struggling with ME/CFS/SEID for several years.  Like many of us, he has been given the ‘go home and have hope speech’, has gone to the high priced medical clinic to no avail, and has been treated by compassionate practitioners who haven’t been able to help him either.
 
Now, he’s as sick as he was at the beginning.  Square One.  SO Frustrating.  And SUCH a familiar story.  So many of us have gone this route of exploring every path we can think of knowing that we have a real physical illness.  And only making small inroads.  Glimmers of hope that eventually fade.  And often, we find ourselves back at Square One.
 
If you’ve read my book, you know that when I got back to square one that was when we decided to turn me into a lab rat.  I literally spent a year in bed on a fixed schedule no matter how I was feeling.  I allowed myself to increase my activity - in very small increments - only when I had a solid period of time without any problems.  This was in many ways torture for a type A like me.  But I stuck to the plan because everything else had failed.  I stopped looking for the miracle and focused on unraveling the clues to my own version of ME/CFS/SEID.
 
The biggest obstacle I had was allowing me to be sick.  To be a patient.  To commit to giving up functioning for a while in order to get a normal life back down the road.  And I think I needed to waste all the other time on those other paths.  It drove home the point that I wasn't getting anywhere going at this half heartedly.  Those were wasted years anyway so what was one more year if it paid off?  I know that this is not an option for many people because of responsibilities.  But somehow, it’s important to relinquish our need to find the ‘silver bullet’ and get focused on figuring out how to get well.
 
How do you deal with the struggle between getting well again and also having a life?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!
 
Look for a weekly posting on Tuesdays.  And consider being part of the conversation.
 
Be Well Again,
Martha

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ME/CFS/SEID Feng Shui – How Does Your Energy Flow?

9/13/2016

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I was recently rearranging the furniture in my family room in order to accommodate a new door.  I also just wanted a new look without buying new furniture.  As I began to move things around, I was surprised at how different the same things could look and function just by rearranging them. The energy in the room changed too.  It felt airier and brighter – it flowed better.   Of course this got me thinking about ME/CFS/SEID and how poorly my energy flowed.

For most of the first half of my struggle with ME/CFS/SEID, I didn’t regulate my energy at all.  I burnt up whatever I had then crashed.  There was no pacing.  There was no intension to plan my day around what I could reasonably handle.  And most important, there was no progress toward getting better.  The opposite was true.  I was getting worse.

Once I decided to take more control of my ME/CFS/SEID, my energy flow changed dramatically.  Instead of the abrupt go, go then stop, stop, stop, I began to use my energy reserves at a slow but steady pace.  Much like the familiar Tortoise and Hare story, I was slowly getting back to wellness one day at a time.  And over a long period of time I got there.  I’m guessing that I left a few Hares behind still trapped in the cruelty of ME/CFS/SEID.

I’m sitting in my newly rearranged family room as I write.  What a difference.  The energy is flowing easily - not rushed or stopped up.  How are you managing your energy flow?  Have you embraced your tortoise?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha

4 Comments

ME/CFS/SEID Approach – Time to Re-evaluate

9/6/2016

2 Comments

 
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As the kids go back to school, a lot of people return to a more normal pattern of life and activities.  The summer slips away and we’re looking toward fall and the changing of the seasons.  But for many people who are struggling with ME/CFS/SEID, the summer wasn’t that much different.  It was, for the most part, more of the same ‘dealing with ME/CFS/SEID’ issues.  For many, the summer provides a frustrating reminder of what we can’t do as we watch others plunge into all the outdoor summer activities.

When I was first struggling with ME/CFS/SEID, summer was a cruel exclamation point on my failure to return to a healthy life.  It seemed like an endless time of other peoples’ leisure pursuits that were beyond my participation.  Well, the good news is that it’s over.  So as others trend back to their regular schedules and plans, it’s a good time for those struggling with ME/CFS/SEID to do the same.

As we often hear, same approach, same result.  Now is a good time to step back and evaluate your personal approach to dealing with your version of ME/CFS/SEID and how it’s been working.  For some, the default approach is day-to-day with no formal plan.  For others, the approach is more structured.  Whatever you’ve been doing, take time to evaluate where you are now compared with three months ago, six months ago or last year at this time.  Are you healthier?  About the same?  Somewhat worse?  Have you been consistent with what you want to be doing to manage your ME/CFS/SEID?  Has your approached worked?  Do you need to make changes?

This process can be frustrating or inspirational.  For me, honestly, I failed in my first few attempts to shift my approach to ME/CFS/SEID.  But after a few years of getting absolutely nowhere – actually worse which culminated in a crippling relapse – I had a moment of realization.  If I ever wanted to get out of the ME/CFS/SEID hole, first I had to build a ladder and then I had to climb it – one rung at a time.

How would you evaluate the approach you’ve been using?  What changes are you planning to make?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha

2 Comments
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    Hello,  I'm
    Martha Kilcoyne

    Welcome
     to our Community!

    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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